Pioneering Women, Angelina Jolie and Mac and Cheese

August 27, 2018 by Amy Byer Shainman

I happen to be part of a generation of women who are the first in our families able to get ahead of our genes. We are a generation of women who, unlike our ancestors before us, have options available to us to reduce our cancer risk. We are a generation of women who can make choices to reduce our cancer risk by removing body parts – having our breasts and/or ovaries removed – before these parts have a chance to develop into cancer. We are women who know our BRCA1 or BRCA2 genetic status, and what that status means. We are empowered to be proactive with our knowledge.

Removing body parts is not the only option available to us to reduce our cancer risk; however, it is currently the best option we, as BRCA1 or BRCA2 carriers, have to decrease our cancer risk drastically. Many of us see these prophylactic surgeries as our best chance at staying alive, not only for ourselves, but for our partners and our children.

The most famous person to date that has had these preventive surgeries is actress and humanitarian Angelina Jolie. My mastectomy and bilateral salpingo-oophorectomy with hysterectomy were in 2010, three years before Angelina first came forward. With Jolie, BRCA carriers, like myself, felt we now had a voice, a champion; the world had its poster child for BRCA. As a passionate advocate, I was thrilled with the platform Jolie’s announcement gave me and the awareness it brought to hereditary cancer as a whole.

One thing I was not expecting from Angelina sharing her story was how much it was going to help me communicate with my children, specifically my daughter. My kids, Brooke and Ben, were only eight and five, respectively, when I had my prophylactic mastectomy, so at the time, my husband Jon and I told them what was going on with me in an age-appropriate way. We told them that “Mommy was going to the hospital for a ‘mommy checkup’ and was going to have a few things fixed by the doctor.”

As my daughter, Brooke, got older and started to see my advocacy work firsthand, I felt it was necessary that I have another discussion with her, as I did not want to have a mother-daughter relationship where I thought I was “hiding” things. However, it was a struggle to find the right way to dive into that particular conversation. However, not having any conversation was starting to cause me quite a bit of stress.

Angelina opened the door for me to have that conversation.

“What is up with that?” Brooke asked me one day while looking at the news on her computer. “Angelina Jolie, like, cut off her boobs or something?”

That was my cue. “Well,” I replied, “that is not exactly what happened. Let me explain it to you.”

“Well,” I said, “Angelina has a family history of cancer, and she didn’t exactly ‘cut off her boobs.’ What she did is that she had her breast fat and tissue removed and then replaced with new, healthy tissue in the form of a breast implant. Imagine one of your stuffed animals getting new stuffing. It’s a little more complicated than that, but basically, that’s what she did. And she did this to save her life so that she could be there for her kids.”

I continued, “The reason she did this is that she has a gene mutation that has an extremely high percentage/high chance of causing her breast tissue to be harmful, so Angelina wanted to get some new tissue before the tissue she was born with became harmful. I also did what Angelina did so I could also remain healthy, because I, too, have the same gene mutation.”

I lifted my shirt so my 12-year-old daughter could see my breasts and see how “normal” they looked. Brooke asked me what I had been fearing she would ask: “Am I going to have to do this too?”

I knew that question might come, so I did my best to keep my composure. “Well, we don’t know. Maybe. But that is something you don’t have to think about now. That is for later when you are an adult. Plus, medicine and research are advancing every day, which is great.”

I kept it positive and then casually said, “Let’s go get some mac and cheese.”

I had an opportunity that my ancestors before me did not have: surgical options allowing me to stay alive. Silence is not an option for me; I’m compelled to speak up and respond, continue with my advocacy work, and pay tribute to those before me. Also, I must honor my children. I feel a need to be part of the momentum of awareness and research that hopefully leads to better, less invasive cancer risk-reduction options for them as adults.

It is my parental responsibility to take care of Brooke and Ben, physically and emotionally. By talking to each of them in age-appropriate, meaningful ways about a difficult subject as they continue to grow, communication between us remains open. I view it as part of my parenting duties as a mom who is a BRCA1-mutation carrier. Inevitably, one day both of them will have to make their own choices surrounding their health and if they choose to undergo genetic testing. They each have a 50 percent chance of inheriting my BRCA1 mutation. With our family medical history, it’s my job as their mom to nurture them in such a way that allows them to make the best health care decisions for themselves in the future.

Amy Byer Shainman is known as The BRCA Responder, a passionate patient advocate who provides education and support for BRCA and other hereditary cancer syndromes. She is the executive producer of the award-winning documentary Pink & Blue: Colors of Hereditary Cancer. This guest post includes excerpts from her upcoming memoir: Resurrection Lily —The BRCA Gene, Hereditary Cancer, and Lifesaving Whispers from the Grandmother I Never Knew. She lives in South Florida with her husband Jon, their teenagers Brooke and Ben, and their dog Shiro.